Bounce Back
Risk and resilience in coping with Tourette Syndrome or chronic tics
Why do some families experience more distress than others in dealing with tics and what can we do about it?
Our international research group is planning to study risk and resilience, differences in coping strategies, quality of life and stigma. We will study this in children and adolescents with Tourette Syndrome or chronic tics and their parents, as well as in adults with chronic tics. The results may help clinicians to better explore an individual’s strengths in dealing with the disorder, and improve support.
Please let us know if you or your organization would be interested in participating!
Who can participate?
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(Patient) organizations that want to communicate our research and share a link that allows the following groups to participate in an online survey
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Children and Adolescents with Tourette Syndrome or chronic tics and their parents
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Adults with Tourette Syndrome or chronic tics
Background
Living with a chronic condition can cause hardship. Not only for adults and children with tics, but also for parents and the family as a whole. This requires adjustment as to live a happy and healthy life. But why do some people or families struggle, while others succeed to adapt very well to living with tics? Treatment of individuals with tics is mainly focused on reducing or gaining better control of tics. However, many other aspects are perhaps even more important to functioning in daily life than the severity of tics. The quality of life of individuals with a tic disorder has been a long-standing interest in research. Still, there are many gaps in our knowledge. Such as, what are the best ways to cope with the disorder? What makes that one person or family suffers more than others? What explains that some individuals experience more stigma than others? What role do family, friends and others play in an individual’s well-being? Most of all, we want to know what makes people strong to overcome difficulties!
Research Study
When you or your organization are willing to participate, we ask you to communicate our study, and share a web-based link through which adults, children, adolescents and their parents can participate in an online survey. This takes a good hour to complete, and can be done within two weeks. The data will be safely stored under an anonymous code in an encrypted database that complies with international Data Protection Regulation laws (GDPR). Personal information that might identify participants will not be included in the database.
Researchers
During this research study we work with clinical centers specialized in tic disorders and patient organizations in Europe, Israel and the United States.
For more information you can contact Annet Heijer per e-mail: a.heijerman@accare.nl